How to Advocate for Yourself or a Loved One With LEMS

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by Lori Dunham |

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Raising a child with a rare disease like Lambert-Eaton myasthenic syndrome (LEMS) has its challenges. One area that was challenging for me was knowing when to push beyond the bounds of normal advocacy for something I knew my daughter Grace needed. With practice and time, I have grown stronger in knowing how to best advocate for her.

Since Grace was diagnosed, I have had to heavily advocate for her on multiple occasions. Some days it’s making sure she has the same schooling options as my other children. Other days, it’s appealing a change from our insurance provider to move her primary care manager. Whatever the instance, I have found a few things that help me wade through the feelings of not being heard, in order to reach an acceptable solution.

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Stay calm

I tend to go into hyper-fix-it mode when something is off. If it is regarding Grace’s health, you can be sure I am all over it. But I have come to realize that some things won’t be fixed overnight — they take time. For my mental health and the well-being of my family, it helps if I intentionally stay calm. Becoming overly emotional and impatient will only hinder whatever it is I am trying to accomplish.

Be kind

By advocating for ourselves and our loved ones, we’ll have a lot of red tape to wade through. I find that if I start by being critical or on edge, the person on the other end of the phone will become defensive and uncooperative. I try my best — sometimes succeeding better than others — to be kind and patient as I petition for what is best for my daughter.

Ultimately, we need the person on the other end of the line to help to make things happen. Usually, that is more easily accomplished with a polite and gentle manner.

Be confident

You know your body the best. Be confident as you walk through the advocacy process. Don’t be afraid to ask questions or voice your concerns. The worst they can do is say no.

Educate yourself

Because LEMS is so rare, I have often found well-meaning doctors grasping at straws about how to proceed in treating Grace. A few times, I have been more up to date with information on FDA-approved medicines than her doctor. Be sure to educate yourself and clearly communicate what you have learned to those making medical decisions with you.

Thankfully, Grace’s doctors are extremely accommodating and interested in what I have learned.

Wholeheartedly share what you know. You are an expert about your own health!


Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.


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